Emerging into the world at eight weeks premature, 2lbs. 2oz, my miniscule body could literally fit in the palm of your hand. I was supposed to be born on Halloween (of all the nifty days!), but I was a Leo instead of a Libra. The universe obviously had a much different scheme in mind for me. Not escaping unscathed, my sight was permanently affected by Retinopathy of Prematurity (ROP). I had a Patent Ductus Arteriosus (PDA) surgery to repair a hole in my heart, which left me with a long, gnarly, Frankenstein-esque scar up my torso’s left side. And lastly, the very small bump atop my skull reminds me of the life-saving yet ototoxic drugs that were administered.

One of my earliest hearing loss memories was at 2 years old, climbing the re stairs at hospital, and then having a small room of intimidating doctors put a strange cap with wires and contraptions on my head. But, it was painless and over before I knew it. I was already wearing glasses, when at five (or was it 4?) years old, I received my first hearing aid…a Siemens BTE for my left ear (which had a mild-severe ski-slope, high-frequency hearing loss), and my right ear, which only had a mild loss, did not get a hearing aid. I remember the audiologist being a nice lady who sat me in the tiny booth with headphones, listening for the beeps and words. The day when she put the hearing aid on me, she fiddled with the volume and tone controls, saying, “BAH, BAH, BAH!” into the microphone as she set levels. My mum secured the apparatus to my glasses with a piece of yarn, every day. Thus began the foray into semi-bionic living. With my new, “ear”, elementary school included speech therapy to help me pronounce my ‘s’ and ‘sh’ sounds, and ‘m’ and ‘n,’ which sounded exactly the same.

At nine years old, we began learning instruments in music class. The music teacher, however, was not much of a empathic person, and once, when I tried to advocate for myself by asking if I could move closer to see and hear better, she scornfully sighed, saying, “Oh, Justin, relax!” Up unto this point, apparently, I had been a carefree, little self-advocate, politely asking people to please face me when talking so I could see their faces. I withdrew from speaking up for myself for many years to come. I did not ask for closed captions, so I know I always missed parts in shows and movies. It was the first time where I began to form a philosophy in life: I realized that we should want to help people (and their accommodation requests) when we can, doing so genuinely. I also began feeling ashamed of my noticeably different ability status and wanted to hide my hearing loss. My first formal music experiences were disheartening ones, unfortunately, and even my parents decided for me that if I wanted to try guitar lessons at a young age, that my hearing loss would impede learning or enjoyment.

So, I went through elementary and then middle school, not wanting to play anything remotely music-related. I did however, begin to find music that I could enjoy, close my eyes to, and felt completely free to allow myself the catharsis of my imagination whilst listening. I had my own little cassette Walkman, and would put the volume up on the old foam headphones so I could hear it. My eclectic tastes in middle school ranged from the first Enigma album, to Metallica, Nine Inch Nails, to even some rap. Respectively, I enjoyed the ethereal textures, the distorted guitars and winding riffs, the visceral tones, and the piano parts and drumbeats. I always had difficulty with understanding lyrics, so the instrumental part of the music was and is still, the first thing that catches my attention.

Middle school years are described by most as being pretty rocky, and my obviously thick glasses and ugly hearing aid made me a target of continuous ridicule. Back in 3rd grade, I got a Siemens ITE hearing aid, as my parents felt it would be less noticeable, but with my very short hair, it just stuck out even more. My hearing took a noticeable drop, but I denied and tried to fake hearing better. In 7th grade, I made the choice to secretly stop wearing it, as it would squeal and I would be totally unaware of its high-pitched feedback. My only indication of it malfunctioning was classmates looking at me, pointing and laughing. Luckily, I had Dawn, a fellow classmate, to gently tap me on the shoulder and point to her ear discreetly, so that I could fidget with it, while she chided others for their immaturity.

Interestingly enough, despite trying desperately to hide my hearing loss during my middle school years, I found an ASL class that met weekly, which I attended for a few years until it disbanded. I enjoyed it immensely, and even earned my ASL interpreter badge in Scouts. At the time, I knew I wanted to go into some kind of helping profession when I grew up, but despite even being discouraged (because of my low-vision and hearing difficulties) from becoming an EMT or Paramedic by some family friends, I still wanted to find a way to help others. I was quite inspired to actually go to college at Gallaudet, and become a teacher of the d/Deaf. Then music found a way back into my life as I was going into high school…

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4 thoughts on “The Perseverance of Sound: Part I”

Hello. I’m new to following your blog 🙂 Thank you for sharing Justin’s story. I recently experienced sudden hearing loss in my left ear, which has left me deaf in that ear. I am now dealing with issues that come with my hearing loss and unilateral hearing – difficulty hearing in background noise, sensitivity to sound, pressure in my ears, dizziness and tinnitus. Reading Justin’s story has filled me with hope, and it is great to read such a positive account of hearing loss.
I am also a teacher of 4 year olds, and reading about how at 9 years old, Justin had such an unsympathetic teacher, really struck a chord with me. I am always cautious to treat my students with care, and think sometimes teachers don’t realise what an impact their words and actions can have on young children…
Take care. Carly

SWC is happy to share stories and experiences, as that’s how a lot of us found the SayWhatClub–through someone who posted an SWC blog or newsletter article that we published.

I’m sure sudden hearing loss is difficult to deal with and is an adjustment. Like Justin, my hearing loss began early in life and that allows one to learn some valuable skills along the way, such a lipreading and some added brain power to fill in the blanks of hearing loss. I think it would be much harder to experience a loss suddenly.

I was a preschool teacher for several years, and being different yourself does make you more mindful of the impact your words and actions has on the children in your charge.

We’re happy to have you following our blog, and if you’d like to learn more about SWC you can go to our website @saywhatclub.com where you can read more about our listserv/email groups.

You can also follow us on Facebook: https://www.facebook.com/SayWhatClub/ where we post many interesting and helpful articles and news items related to hearing loss. We have two closed Facebook groups–one for Gen-Yers 18-40 years old and then a general group for people of all ages. If you have any questions we’d be happy to respond. It’s great to connect with others who understand life with hearing loss, as you find a lot of good info by sharing with each other, and that’s what SWC is all about.

Thank you for the message and information Michele 🙂 Yes, I find it really helpful to share experiences and to read about other people’s experiences too. I’m happy I’ve found this group and look forward to future posts. Take care. Carly

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